Co-design of the ACTIVE-FAB (increAsing physiCal acTIVity and limiting sEdentary behaviour in FABry disease) intervention

Cherry Kilbride, Louise Mansfield, Sarah Gosling, Derralynn Hughes, Daniel Bailey
Purpose:

The aim of this study was to co-design a physical activity and sedentary behaviour intervention tailored to the needs of adults with Fabry disease.

Methods:

Views and experiences of physical activity and sedentary behaviour were explored via focus groups with 13 adults with Fabry disease, eight family members, and six MPS Society (advocacy) staff. Semi-structured interviews were conducted with 10 healthcare professionals (physicians, clinical nurse specialists, and a physiotherapist). The data from the focus groups and interviews informed participatory workshops (N=12 adults with Fabry disease) to test intervention concepts and define the intervention design. Patient and public involvement work was conducted throughout the intervention design process to refine the intervention components. Data was analysed using the Framework Method, combining both inductive and deductive coding.

Results:

Themes generated from the focus groups, interviews, and workshops suggest that the ACTIVE-FAB intervention will comprise of five components: (1) an initial consultation with a physiotherapist to discuss baseline physical activity and sedentary behaviour, and goal setting, (2) progress consultations with a physiotherapist to discuss engagement with the intervention, and review of physical activity and sedentary behaviour goals, (3) online education covering the importance of engaging in physical activity and limiting sedentary behaviour, and physiotherapist-led examples of adaptable physical activities, (4) a wearable device that tracks physical activity and sedentary behaviour, and (5) peer support.

Conclusion(s):

This study has identified intervention strategies to increase physical activity and reduce sedentary behaviour in adults with Fabry disease. The feasibility, acceptability and effectiveness of the co-designed intervention will be subsequently evaluated in a randomised controlled feasibility trial.

Implications:

The co-designed ACTIVE-FAB intervention could provide an effective adjunct to the pharmacological treatments already available for individuals with Fabry disease, optimising management of the condition. This could lead to individuals with Fabry disease receiving physiotherapy input and improved healthcare in the future.

Funding acknowledgements:
Funding from the Society for Mucopolysaccharide Diseases (MPS Society) and Brunel University London is supporting the research.
Keywords:
Physical activity
Sedentary behaviour
Co-design
Primary topic:
Health promotion and wellbeing/healthy ageing/physical activity
Did this work require ethics approval?:
Yes
Name the institution and ethics committee that approved your work:
Institution: National Health Service (NHS) Ethics committee: Health Research Authority (HRA) and Health and Care Research Wales (HCRW)
Provide the ethics approval number:
REC reference: 24/SC/0025, IRAS project ID: 332233
Has any of this material been/due to be published or presented at another national or international conference prior to the World Physiotherapy Congress 2025?:
Yes

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